Archive for the ‘fatigue’ Category

So, another three months has passed by, I’m still alive, and got to go to Hickman Cancer Center today for my transfusion of good drugs. Zometa…or as I kinda like to think of it now, as “Zippity-do-dah Zometa”.

Two years and 10 months out from BC diagnosis, and I’m doing pretty damn good. Lucky me….discovered icky cancer, had good insurance, lots of accumulated sick leave (well…not anymore…) and signed up for the most aggressive treatment options possible, including the Zometa clinical trial. At the time, I had absolutely no reservations about signing on for the trial. And no, it wasn’t about being nice (ha! fooled you!) or advancing research (nice idea, just not why I signed on) but if I’m completely honest about it, I was mostly interested in staying closely connected to an oncologist. I didn’t care what the excuse is/was , as long as I got to sign up for an onco appointment every three months, I was happy.

Oh sure, I read everything and talked to everyone about Zometa, and mostly all the medical people nodded in agreement, “probably worth a try”. And honestly, I was, and still am, willing to do anything to prevent recurrence. And lucky, lucky me…..turns out Zometa maybe really is one of the good cancer fighting drugs.

Last month (12/2011) researchers published results that indicated Zometa was not only helpful in strengthening bones from the damage that cancer treatment inflicts, but also seems to protect against recurrence, as well.

“The benefit persists” long after treatment ends, said Dr. Michael Gnant of Austria’s Medical University of Vienna, who presented his research last week at the San Antonio Breast Cancer Symposium.

Gnant’s study showed women who received the bone drug Zometa were 37 percent less likely to die than women who didn’t. That means that 4 to 5 more women with breast cancer out of every 100 were alive seven years later because of the treatment.

Some cancer specialists are now calling for Zometa to be offered to all patients like those in this study – younger women forced into early menopause by hormone-blocking cancer treatments.

“It’s a new standard of care,” said Dr. James Ingle, a Mayo Clinic breast specialist.

Last Friday I had a repeat ultrasound of my ovaries. Repeat, because three months ago there was a “blockage” in the area of the right ovary. Apparently, you couldn’t see a thing. My doc said since my CA125 test* results were so good, that we would wait to retest.

And on Friday….again, the technician couldn’t see the right ovary. Again, I had a transvaginal ultrasound. (For the record, this is my absolute least favorite test. I won’t even describe it. Yuck.)

I suppose my doc will see the records by Tuesday, which is not soon enough for me. I’m trying to not jump into the anxiety pool, but I fear I’m already there.

My hope is to find out it’s all for nothing….perhaps I’m just full of s*#^.

*

What is CA 125?

CA 125 is a protein that is a so-called tumor marker or biomarker, which is a substance that is found in greater concentration in tumor cells than in other cells of the body. In particular, CA 125 is present in greater concentration in ovarian cancer cells than in other cells. It was first identified in the early 1980s, and the function of the CA 125 protein is not currently understood. CA stands for cancer antigen.

How is CA 125 measured?

CA 125 is usually measured from a blood sample. It can also be measured in fluid from the chest or abdominal cavity. The tests currently in use are all based upon the use of an antibody that is directed against the CA 125 protein (monoclonal antibody technique).

Nothing says “it’s time for surgery” quite like an autologous blood donation. So yesterday I went to the Red Cross and stuck out my arm so I could bank a bag of blood. With any luck, it will have been a needless precaution, and Dr. B won’t have to use it during my “big deal” surgery on June 17th.

I haven’t posted much as I have been dog tired after days that begin at 5 am and end at 10 pm or later. School is almost out, and that means lots of extra work from grading to packing up two classrooms, final reports etc. In addition, trying to get ready for two surgeries, plus be a mom, and try to pick up the slack at home since Lou has been disabled by knee surgery. It has been an intense month in all spectrums of life.

Well, it has been quite some time since I last wrote here. Not because I didn’t have anything to say, that is for sure. But no, it has been due to my newest malady which has proven that cancer is not the only thing that can slip invisibly into your life and create a new daily reality.

About a month ago, in late February, I saw Dr. Evans, my general practitioner, for a regular cholesterol check. At the time, I was beginning to feel extremely run down. Just going to school every day was a task that seemed to require a Herculean effort. There were days when I came home that I had to tell myself that I really could make it into the house, and I really could make dinner, and I really could get through the night….if I could just get out of the car… It was a bad time, and I was not able to complete the essentials of work and family life. Each day I felt like I was getting deeper and deeper into a hole, and I was so tired, I could hardly even think. Thankfully Evans included a test for TSH, Thyroid Stimulating Hormone. The blood test indicated that I was extremely hypothyroid, meaning that my thyroid was not producing very much of the important thyroid hormone. Thus the reason for the extreme fatigue. Other side effects were a sudden weight gain, slurring of speech, “choking up” feeling in my neck, puffy in the face, neuropathy in my hands, and very sensitive to the cold. in February. in Ohio. Oh, and depression too. Yea, like I needed that.

When nurse BJ called me with the news, I remember being so tired, and thinking, “great. what pill do I need? how in the hell am I going to get to the pharmacy to get it?” Thankfully, the medicine I have seems to be effective, and while I don’t feel great yet, I am so much better than I was a month ago.

Except I feel as though I am still “behind” in everything. I can look around my house and see ten things that I am way behind on. The second I wake up in the morning I am working really hard to be super efficient with my school work, but I always, at the end of each day feel as though I’ll never get caught up. It is such a discouraging feeling, and then throw a few technology difficulties in the mix, and well…sometimes it all………..doesn’t get done. It is such a newer, higher level of frustration I get to experience now…..which is why I’ve been spending more time daily in meditation.

Lucky for me, I got to see Veronicafrom The Victory Centertwice in her last month there, and she introduced me to a new CD called The Divine Name by Gregg Braden* and Jonathan Goldman**. I can hardly describe the powerful positive effect this particular sound therapy has had for me, except to say that it is awesome. Each night I listen to this recording or the chanting on the “Dali Lama” CD, and many mornings as well. The days I skip this routine, I can tell the difference. More cognitive dissonance. So I try real hard to get to my bed early enough in the evening to listen to these recordings. For so many years I have been chasing the idea of meditation, I am grateful to have finally found a place to begin.

Just another thing I am late in doing….I’d like to thank the anonymous woman who handed me this beautiful bouquet last month in the parking lot of Kroger’s in Perrysburg. It was a very low energy moment for me, and the gift of the pink roses proves that Karma and the spirit of JBN (Just Be Nice) is so very real.

If your breast expands exponentially and independently will you eventually explode?

Thats what I found scrawled on the scrap of paper I keep in the car while I drove to my hastily arranged ultrasound appointment this afternoon. Last night I got to see one of my “guys”, Dr. B, about my big and getting bigger boob, right side. Getting bigger as in: seeming bigger, seeming to settle down….then getting bigger, and seeming to settle down. Or at least that is what it has been doing for the last week or so. Except for the last three days. Getting big…..getting bigger…..bigger…..even bigger…. On Wednesday the boob-with-a-mind-of-it’s-own started pulling the special bra, the one that holds the “foob” on the left side in place…over to the right side. Last night in the middle of the night I woke up feeling like some crazy PS snuck into my room and expanded me 200+cc’s. Not very funny was my first thought…..whichever brain cell decided to sneak that one in doesn’t know about my particular distaste for nasty misogynist horror films.

Anyways, B’s nurse managed to get an appointment for me today at 2:00 to receive a little ultrasound view of whats happening. Except I got some kind of Buffy the technician sonographer who told me she worked at Stanford for a year until she came back to Toledo. OK, I thought, I trusted you up until then…. Of course she saw “nothing”. No doc came into the room at all. Apparently he looked at the images remotely and also saw nothing. They really did not care that I told them it is definitely “something”.

Right now at 10 pm I think it is even bigger than it was today. I can feel the boob-with-a-mind-of-it’s-own now pulling on the radiated skin on the flat scary-scar-ry -side -of-my-chest. Now that’s a definate sensation of creepy and not comfortable. Who ya gonna call? Wish I knew.

And as if that weren’t bad enough, Dr. Evans, G.P. called and told me the blood test last monday showed EXTREMELY hypothroid. And NO WONDER you feel tired with results like these! Should be in the 4-5 range, but my number is way, way, WAY higher.

Now it’s not that I want to be sick, but when you do feel crappy, it’s nice to have those feelings validated in reality.

Tooo tired to write anymore……….let’s wait and see what tomorrow brings.

Monday was Zometa #5, the infusion that almost “wasn’t”. I’ve been having problems with my right arm for a few weeks. Weakness and weirdness. Not exactly painful, but uncomfortable. Well, really uncomfortable, but it only occurs under certain muscular tensions, such as carrying a grocery bag with handles down at my side or brushing my teeth, that is where I noticed it first. Now though, I have noticed that handwriting is really uncomfortable, too. It makes the lower muscles in my arm ache first, then the muscles in my upper arm, then my hand. Ouch.

So I had the distinct impression that I almost lost the infusion, in that my nice clinical trial nurse said, “hmmn, I have to talk to the Dr. first, and be sure it is OK for you to get the Zometa today because the (infusion) nurse is nervous about giving it to you.” I got a little panicky…..as in, no, no, don’t take away my zometa! There I was, all alone having a little tiny freak-out session about not getting a drug that is a clinical trial drug anyways because I have completely psyched myself up that this is (again) going the extra mile in “The Saga of the Slaying of the Cancer Killing Cells.”

then later, it hit me like a shot in the middle of the night. This must be what an abusive relationship is like. I want to keep on living with Zometa, and my well meaning friends (nurses) might be suggesting thinking about twice about this…….may be thinking that. No one has come right out and said that.

Hmmnn. Also have a problem with my right eye being really easily irritated and getting red. Actually both eyes have been really puffy in the evening and morning. What’s up with that? And just feeling kind of shaky in general. Tired. Exhausted, really. Shaky. Add to that the high blood pressure news from last month from Dr. Evans, and well……….this is all challenging my image of myself as a basically really healthy person who just happened to get a little case of cancer.

Saw Dr Evans yesterday, and he mentioned that fear of losing Zometa is probably pretty normal. Made an analogy to Zometa being one of my “shields” in my battle against cancer. Yeaaaa….that’s it. That’s exactly it. And by the way, now the friend count telling me I don’t look so good is climbing, so I guess it is not all in my head after all.

The bright spot? Saw Veronica today for some “Healing Touch” at The Victory Center. When I told her I am now daily dependant upon the Dali Lama chant CD, she quickly switched the music to a special higher vibrational level CD that I must find and buy. I quickly zoned out on it and it is better than any drug, I’m sure. It was so good to completely relax.

falling asleep here at the keyboard….putting dali on the CD player…more later….

3:55 am Saturday morning (the following is the conversation I had with my brain for the last 20 minutes. It is bullying me into doin’ this post.)

Me to my brain: “Ok, Ok, I get it. This time I’ll comply….but only because it is saturday and I don’t have to wake up in an hour or so and go to work.”

My brain: “get the list started. To do: write the block plans for next school year”

Me: Are you kidding? You woke me up for this? To make me write a list for something to do for next school year? Forget it. I’m not doin’ it. I’m exhausted. You have messed with my mind for the last two days at precisely 3:15 am and not let me get back to a good night sleep. I ain’t gettin up now in the middle of the night to write myself notes about organizing for next school year. You ain’t the boss of me!

Brain: Uhhh, actually, I am. Get up. Write out the lessons for next school year. Make sure to have the school nurse not cover so much info in her guest appearance in your class. Utilize her as a good resource for two things only….body image and sleep.

Me: But, lesson plans for next school year??? too much can happen between now and then. I’m not doin’ it. I’M TOO TIRED! YOU HAVE KEPT ME UP THE LAST TWO NIGHTS WITH THIS LIST MAKING OBSESSION! Anyways, lesson plans for the next school year are best blocked out the two weeks before school starts……you don’t know what great ideas you might have over the summer….who you might meet…

Brain: Get up. Write it out about the plans for the nurse. YOU are the one who doesn’t know what is going to be happening the two weeks before school starts.

and then it hit me. ohhhhh yeaaaa. that’s right. I really don’t know what is going to be going on with me in mid august. God knows I have a plan for June, but my plans for July and August are really all dependant upon the best possible outcomes happening in those months.

So I have been so busy lately with big deal kid and family issues I haven’t had a single second to write during normal daytime hours. I guess that is why my brain is waking me up so damn early lately. (Third day in a row the wake-up call has been in the three o’clock hour. I am SO TIRED!) I have recently scheduled the first two surgeries for my reconstruction!! Finally! I had been badgering Dr. B about discussing and scheduling these dates for 6 months, he kept putting me off until I completed all my physical treatment for cancer (the chemo and radiation). I didn’t like that answer then, but after the awfulness of radiation I understand his reasons so much better now.

Anyways, the first reconstruction surgery is scheduled for June 3 and it is called……..ummmm, I forget the name of it. It is a relatively small surgery compared to the “flap”… and the second surgery, the BIG surgery, the TRAM Flap is for June 17. The third surgery, the “exchange” surgery can’t be scheduled until the flap surgery has settled down and the swelling has gone down enough so we can see exactly what that left reconstructed breast really looks like, so the new right breast can be sized and shaped to match the cancer side new breast. Therein lies my brains’ anxiety I think. I really don’t know where I will be in the surgery and healing process in August. I could be in a Percocet fog. I could be just getting ready for the third surgery in the week or two before school starts. Hell, I’ve had cancer…God knows whose office I might find myself in……… I keep remembering that. Remission is NOT on my vocabulary list. yet.

You know I really try hard to not whine about things…but when I hear others complaining about how things aren’t working out for them, I have to bite my tongue. What I want to say is “Get a grip!! Whatever your problem is, it is not that important!” But no, I don’t go there.

Quick summaries:

Liquid Gold

So last week I saw the plastics guy, my favorite doc. It had been six weeks since my last radiation and the skin on my chest, while still pretty unattractive, looked a LOT BETTER than it did in the weeks after radiation. Therefore, I was kind of surprised when he called in his oncology aesthetician to inspect the skin on my chest to make recommendations on the correct product to prescribe for the burned field. Remember, we are going to ask a lot of this skin in about six months when I hope to do the breast reconstruction. Hope to turn the scarred, ribs-showing and tattooed (compliments of the radiators at Hickman Cancer Center) deformed chest wall into something round and smooth and good lookin’ under a t-shirt. Well. Let me say this. It is amazing just how much .o8 oz of a special, special gel (TNS Recovery Complex) costs. Never in my life have I spent so much on so little. Also, never in my life did I think I would be so easily won over by a tiny bottle of very expensive product. Check it out: http://www.skinmedica.com/skin-care-products/anti-aging/tns-recovery-complex I think I might actually buy this little bottle of liquid gold again even after the reconstruction. Gotta be cheaper than a facelift.

The Estrogen Story

It’s been almost two weeks since my last estradial blood test…this is the blood test I’m doing every two weeks for the forseeable future to be sure the daily dose of arimidex is not in vain in fighting my estrogen loving cancer cells. Hadn’t heard the results of the last test, and believe it or not, getting the results of your own blood test are not as easy as one might think. Like you can’t just call the lab for the results. Privacy issues. They can’t tell you your own results over the phone. Unbelievable.

Anyways, I finally got the results from NP Joan at U of M, she wrote, “the estradial level was at 14, higher than expected”. YIKES! Does 14 mean I am not in menopause? Geez, now I gotta do more research on this. If I am not in menopause, I have to switch drugs, and begin taking Tamoxifin, which is OK, I just want every day of my life now to be taking the right drug. Being cancer free depends on the correct drug being in my system 24/7 for the next 5 years. I feel like I am being a little obsessive about this, but my “new life” definitely has a paranoid edge to it.

So I will travel up to Toledo again on Wednesday to get another blood test and this time I can’t decide if I smother them with charm or bitch like crazy lady to receive the results of the test within days instead of weeks. It has been an anxiety wormhole, this menopause/estrogen level puzzle.

What would a week be without a Doctor visit?

Saw my local General Family Practice guy today. First time I have seen him since my trip into cancerland. Oh, I like this guy a lot. He is quite patient and smart and listens. We had a nice long discussion today, and it was nice to talk with someone knowledgable, who knows about me, yet isn’t taking “sides’. I was really quite comforted that he was alarmed at the things that alarmed me in my story (remember the chemotherapy decisions?) as well as agreed with the difficult decisions I’ve made (to take the radiation route). It was perhaps not a necessary visit, but it made me feel better. Even better, he invited me back to talk anytime……I always knew I really liked him for a reason. If you need a GP, let me know. I’ll give you a referral to this “good guy”.

Just bein’ nice AGAIN!

Those incredible teachers at my school have done it again. This is our second “Just Be Nice” week. This time we are focusing our efforts on local families in financial need this holiday season. I’ll tell you more in a couple days. The fatigue factor has set in again and I’m nodding off at the keyboard. Again.

day four of awake at 2:30 from hot flashes this morning (except I don’t really like calling it morning…morning usually means getting ready to start my day, and I am really so not ready to start the day yet….)

so. awake at 2:30, now it is 4:04. Alarm clock usually goes off at 4:35. Today I’ll hit snooze a couple times until 5:00. Need to leave for work early (out the driveway by 6:15) to get stuff done that I can’t do at home because I’m so so so tired, and demands of family and children suck up all energy after 4:00 pm. Can’t allow myself to sleep before 9:00 pm or else I’ll be awake even earlier.

Which variable can I manipulate to eliminate the dog-tired effects of post radiation fatigue and hot flash sleep inhibitors?